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Big Time Glutening & No Reaction!


GFLindsey

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GFLindsey Explorer

On Saturday afternoon I accidentally ate 3 wheat flour cookies (See my post "I wish it was an Oreo"). I literally had a panic attack when I realized my mistake and prepared for the worst reaction since going gluten-free. I have yet to directly ingest gluten since starting the diet in early Feb. However, I have had reactions many times after eating things from what I assumed the be cc events - mostly bloating and nausea. Sometimes diarrhea.

It has been over three days. My reaction was not that extreme. I had abdominal pain and cramping. I was exhausted. I also have 4 ulcers in my mouth within 12 hours of eating the cookies (I haven't had a single ulcer since going gluten-free, and I normally would have 3-6 at any given time). I took it easy and barely ate anythin until yesterday at dinner. I am back to eating pretty normally.

So is this normal? I have had stronger reactions with more discomfort in the past 3 months from what I was assuming was CC. Now I am confused!

Also, can I assume I am in the clear from this situation? After 72 hrs, would a big reaction hit me this late?

I don't know what to think. I have been doubting my Celiac diagnosis, but it was given now by 2 GI docs. I am not in denial, I will be following a gluten-free diet for life regardless because I am at a very high risk. However, I just don't want to be overlooking another issue if something else could be coming into play.

Your thoughts?


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GFLindsey Explorer

I guess I shouldn't have said "No Reaction" in the title, because I did have some issues. However, nothing too extreme and actually quite ordinary for how I have been feeling these last 3 months.

T.H. Community Regular

I had someone reply to a post of mine in the forum that might address just this topic!

I'm not sure what the research was, but the poster told me that recent studies that were trying to look at damage vs. reactions, in celiacs, found no correlation. Some people had severe reactions to gluten, some people didn't, and it didn't seem to indicate how much damage had been done. Quite severe reactions sometimes correlated with no discernable damage to the intestine at all, if I understood right. I imagine that's searchable on google or here.

So sounds like whatever your reactions, it can't tell you how much damage was done, yeah? Happy to hear that you didn't FEEL horrifically sick, at least! :-)

On Saturday afternoon I accidentally ate 3 wheat flour cookies (See my post "I wish it was an Oreo"). I literally had a panic attack when I realized my mistake and prepared for the worst reaction since going gluten-free. I have yet to directly ingest gluten since starting the diet in early Feb. However, I have had reactions many times after eating things from what I assumed the be cc events - mostly bloating and nausea. Sometimes diarrhea.

It has been over three days. My reaction was not that extreme. I had abdominal pain and cramping. I was exhausted. I also have 4 ulcers in my mouth within 12 hours of eating the cookies (I haven't had a single ulcer since going gluten-free, and I normally would have 3-6 at any given time). I took it easy and barely ate anythin until yesterday at dinner. I am back to eating pretty normally.

So is this normal? I have had stronger reactions with more discomfort in the past 3 months from what I was assuming was CC. Now I am confused!

Also, can I assume I am in the clear from this situation? After 72 hrs, would a big reaction hit me this late?

I don't know what to think. I have been doubting my Celiac diagnosis, but it was given now by 2 GI docs. I am not in denial, I will be following a gluten-free diet for life regardless because I am at a very high risk. However, I just don't want to be overlooking another issue if something else could be coming into play.

Your thoughts?

SGWhiskers Collaborator

My reactions have become weaker and weaker the longer I've been on the diet. The pros are that a mistake does not cost me sick time and terrible pain at work. The cons are that I might wind up doing accidental damage because I'm slowly becoming a "silent" Celiac again. I'm at 21 months and I wind up with the same/similar symptoms to my peak levels of misery, but at about 5-10% strengh.

And my advice is to listen those GI doc's diagnosis. Don't let your recovery trick you into thinking you don't need to follow doctor's orders. Imagine how good you will feel after a year on the gluten-free diet.

Best wishes.

SGwhiskers

GFLindsey Explorer

TH - Very interesting information! I will search that topic and see what I find. I also was diagnosed as a Stage 1 Celiac, so minimal to no damage had been done to my small intestine. I wondered how that would factor into my recovery time and my reaction to glutenings. Thanks for the info!

SG - Thanks for sharing your experiences. I truly would love for my reactions to decrease somewhat.. I have been miserable these past few months. Can't put anything into my mouth without feeling awful. However, there is a scary side to not having strong reactions.

Thank you both!

haleym Contributor

TH - Very interesting information! I will search that topic and see what I find. I also was diagnosed as a Stage 1 Celiac, so minimal to no damage had been done to my small intestine. I wondered how that would factor into my recovery time and my reaction to glutenings. Thanks for the info!

SG - Thanks for sharing your experiences. I truly would love for my reactions to decrease somewhat.. I have been miserable these past few months. Can't put anything into my mouth without feeling awful. However, there is a scary side to not having strong reactions.

Thank you both!

Interesting, and great topic! I ate some questionable pasta salad after 8 months of strict gluten-free-ness. I had no immediate reaction but the next day I had some cramping and feel that typical scratchiness-sand paper in gut type feeling. I guess that each person reacts slightly different, but that doesnt mean that we can cheat on our diets if it only hurts a little at first.

THANKS very much for bringing this up!

mushroom Proficient

I have been one who wonders about my degree of sensitivity. So far I have traced all my bad reactions to lectins, and avoiding them seems to mean no symptoms. I would get reactions to Rx meds with gluten, but until yesterday (after 2-1/2 yrs) no reactions to foods that I was aware of, not even from restaurants. I was getting pretty blase :rolleyes:

Yesterday I played bridge with my standard group of social players, and was offered (and ate) some cookies the hostess assured me were the same as I had eaten at her house last time (not home-made and for which I had checked the package labelling), which, however, were served on a plate with gluten goodies (but not touching :P) So I ate them. What a misstrake :o Big time bloating, connective tissue pain, insomnia (moaning :lol:) ......

Had to spend a day in town shopping today and dragged my sorry ass through the routines of grocery, errands.... had committed to playing bridge tonight but by the time I made it home (was wondering if I would for a while) I called and cancelled. Monstrous headache, every part of my body aches, can barely hold up my eyebrows... could this be the first time I was food glutened or am I becoming more sensitive? Maybe it was just her gluteny hands on my gluten free cookies that did all this damage???


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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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